New Here and looking for answers

Hi,

I am new to this forum. It all started in Oct of 2014. I had minor surgery and after 2 weeks I was to return to work but continued to have extereme fatique headaches and aching hips and joints (hands,feet knees and neck) along with muscle weakness in my thighs. I was told to see PC Dr. PC did a urine test which showed slight blood and protien in the urine and proceeded with blood tests which was ANA positive 1:160 titer and a homogenous pattern. Referred to Rheumy. Rheumy disregarded the protien in the urine,fatique and the joint pain. He told me he did not think I had lupus. (great)I have a family history of AI. Aunt has polymyalgia, lupus, low thyroid, uncle has RA, mom has low thyroid, 2 cousins also have low thyroid, brother has type 1 diabetes's. These are all on my mom's side. I have Grave's disease for 25 yrs. He did several blood tests all but sed rate (36) and ANA (1:160) was negative for Lupus, RA (11), sjogren's and I presume other AI. I was relieved to hear this but when I asked then what might be causing this fatique, joint pain and weakness and his response is well maybe the operating table was to hard and caused muscle spasms. REALLY! I felt that was a very insensitive thing for him to say. I may not have lupus but my pain and fatique are real! Needless to say I have an appointment with a new rheumy in March.

I currently have only been released to go back to work 1/2 days. By the time I get home and do a few little things around the house I need to sit down. I am ready for bed around 7 but force myself to stay up to 8-9 so I will not wake up at night. I do sleep all night. When I think I have over done it I end up sleeping 10- 12 hrs easliy(weekends) and other days I just can't move and spend my day recuperating.. . Looking back I have had an ocassional rash and itchy patches on my face, arms and chest when in the sun. I now work indoors and have limited sun exposure. I always wear sunscreen and this past year I started wearing a visor when in the sun. Sores in my mouth that I thought and still could be because of mouthwash.

Currently I still have symptoms of fatique, weakness in thighs and achy hips. My feet hurt, knees hurt, shoulders, elbows and hands hurt. My toes and fingers occasionally feel numb. My hands swell and my temp is low between 96 and 97.5. I noticed when I feel bad my temp is low. I use to 98.6 before. I have noticed that I don't have much of an appeitite but I do eat and I have been gaining weight over the passed couple of months. Today my blood pressure was higher then usual. I have acid reflux and bloating and an increase with belching. In the past I have been diagnosed with costochondritis. I have increasing pressure in my eyes and have been referred to see an ophthalmologist and a neurologist. The only thing I was prescribed was the generic for Cymbalta which helps some with the achiness but not a whole lot for the joint pain.

Is it possible that with a posistive ANA titer that down the line I could possible be diagnosised w an AI? If not an AI then what could possibly explain how I feel and a positive ANA of 1:160?

Please help

Thank you.

Hi I'm sorry that you've been having such a hard time with things. I'll try to answer a question for you, like Joy said a positive ANA is one of the 11 symptoms that Rheumy's look at to my a diagnosis. There are 10 other symptoms that they look at too.

Lupus is known as the disease of 1,000 faces. It can look like so many different diseases and that's why it's so hard to diagnosis this disease. Some patients are lucky and get the DX right away and others, like me, it took my Doctors 13 years before they added up all the issues I had and said yep you have lupus and we will treat you now.

As for your question as to whether you'll develop an AI disease or lupus with a positive ANA 1:160 that's hard to say. I can say to honestly that my child who is now almost 22, has had a positive ANA at 1:640 since she was 7 years old. Yes, she has some symptoms of lupus, but still to this day she's not reserved at DX of anything AI or lupus.

Healthy folks can have a positive ANA. There are loads of reasons to have your ANA show up positive. I'd suggest that you keep a journal and write down how your feeling. If you gets sores or rashes take photos of them to show the doctor how they look. It always seems to happen I will have a terrible rash going on and by the time I see the Dr it's gone.

It sounds like you may have something going on but it's not raised it's ugly head all the way. I'd suggested the journal, the photos, and try not to worry to much about the ANA. Stress is part of what makes our lupus flare up and be so bad. A positive ANA is considered 1:80 (which is barely positive by most Rheumy's) then the ANA's double up from there.....1:160, 1:320, 1:640......etc. They look at the ratio and the pattern of the sample. I just wanted to make sure you understood how the ANA was read. If you have any other questions, please feel free to stop by and ask away.

Good luck to you and I sincerely hope you don't get an AI disease of any type or Lupus. Take care and remember try not to stress over things to much it won't help the situation any.

Hugs,
Barbara

To those who think you are faking -- "Why would I *want* to sleep all the time"?

Sometimes we are not sleeping as soundly as we think & often the rheumys order sleep studies or just go ahead and give us some sleep aid to help. Deep restorative sleep is a necessity with any auto immune disorder!

<As I stretch from my 3-hr afternoon nap - must've done too much yesterday.>

Barbara
I have started a notebook of all of my symptoms current and past. I also put a family history and diagnostic issues I have had in the past. I have taken pictures also but they don't come out very good.

Yesturday I was walking in what I thought was a straight line but it felt off and I was sort of dizzy but not like spinning dizzy alost like I was being pulled to the outside of the arch if that makes any sense and then it happen again today but I was standing still. kindof weird

Zulily:

To answer your question about the Cymblata, as far as I know it doesn't do a lot for lupus joint pain. It's used to treat Fibro though. I've managed to win the lottery and have RA/Lupus/Fibro/LGL Leukemia. My Rheumy and PCM really pushed me to agree to take the Cymblata. I finally gave in and said yes I'd take it.

It helped with some of my aches and pains but I had a VERY hard time adjusting to it. I also have a friend who has been on it. It took her a really long time to come off it and I mean she even had to resort to pulling the capsule apart and counting out the number of little tiny beads in the capsule so that she could wean off this stuff.

I wish my doctors had told me about this before I started it. NOW, I'm on three different medications that are ALL DIFFICULT to wean off of. I'm scared to death about trying to stop my medications now. Are you on Cymblata? Did they start you on anything for your joint pain and fatigue? I'm praying that your pain and fatigue lessen in 2015 and that your Doctor can get you on the correct treatment plan.

Please take care and try to rest I know hard that can be, Hang in there and know we are here to listen anytime you need us.

Happy New Year and big Hugs,
Barbara